Guest blog: Parents give daughter with Treacher Collins Syndrome the gift of hearing through bone conduction

Six months before writing this, father Emre, 31, and mother Öznur, 30, welcomed “miracle baby” Elif into their new family. Emre wrote Elif’s story from Istanbul, Turkey, where he works as a customer manager in a private company, and Öznur works as a banker. Emre’s story has been translated and edited from its original form in Turkish.

Learning about our baby’s syndrome and making an important decision

Elif sits with her parents while wearing her first Baha device, a Baha Intenso sound processor.

Our daughter Elif came to the world with Treacher Collins Syndrome, a rare genetic disease. Treacher Collins is a genetic condition that causes deformities of the face and head, often characterized by low eyelids, full ears and an underdeveloped jaw. In some cases people with Treacher Collins Syndrome may also have cleft lip and palate. One baby in every 50,000 births has Treacher Collins Syndrome.

We first learned about this syndrome during my wife’s pregnancy. During the routine examination in the 18th week of pregnancy, the doctor found out Elif had a double-sided cleft lip. One week later, the doctors detected double-sided cleft palate and a double-sided microtia (absence of external ears). Additionally, it turned out that the baby’s jaw was small and pushed back. The doctors suspected some of the possible explanations, including Treacher Collins Syndrome, and mentioned the risks at the same time. Later on, we discussed our opinions on whether to continue the pregnancy. We asked ourselves many questions at this point, and the answers we gave to these questions showed us that Elif should come to the world.

Can happiness be defined?

There is a general assumption that an individual who has physical deformaties will suffer and will be unhappy. Can happiness be defined? We believe that happiness is not in the physical world but in the heart. On the other hand, we believe that every life is sacred. We considered every effort to provide a real life for a physically impaired individual to live, first of all, as a human being. Life evolves in meaningful way, for us and our daughter, and the struggle itself is meaningful. We started to wait for our miracles.

Elif is born and begins to hear

Elif could not breathe on her own, because her jaw was small and pushed back, so she was immediately connected to the respirator and stayed in intensive care for 62 days. At the end of this process we came home with the breathing apparatus. In the second month of her development, Elif was completely free from the respiratory device for life-long use.

Doctors discovered that while Elif has no problem in her inner ear, she has hearing loss in the middle ear. She first began to hear with the help of a Baha Intenso sound processor, brought to us from the United States. Elif showed a noticeable improvement in her perceptions and reaction to her surroundings wearing her Baha device on a Softband. She now wears a Baha 5 Sound Processor.

Solidarity with parents and individuals with Treacher Collins Syndrome

Elif wears her first Baha hearing device, the Baha Intenso sound processor, on a Softband.

After our daughter came to this world with this syndrome, we wanted to find people who have similar situations and to learn from them. I have communicated with various associations and groups abroad on social media. We received very useful information and positive support messages, and we saw the power of the love beyond boundaries.

While Elif was in intensive care, when we were not with her, we found other affected families in our country through our own efforts and visited a significant number of them. Later, we began a meeting with some of the families with Treacher Collins living in Turkey. In the name of starting something new, we have built solidarity among ourselves.

The biggest problem facing people living with this syndrome is others’ negative attitudes and behaviors exposed to them by society. However, the only expectation these individuals have is to live like normal individuals in society and to not be exposed to others’ attitudes because of their external appearance.

Elif’s journey on social media

We share the processes of Elif’s journey in Turkish on the social media accounts that I set up in Elif’s name. Anyone who wants to support us or contact us can reach us at these links on Facebook or Instagram. We are also excited to announce that in September we will publish a book about Elif’s journey.

Every individual is valuable

We are beginning our awareness work with an enthusiastic amateur spirit, and our goal is to raise awareness that every human being is valuable just because they are human, to be able to feel that every person can overcome their challenges and that their value is not based on their appearance to others.

The opinions expressed in this blog are my own views and not those of Cochlear.

Click here to learn more about the importance of early intervention in a child’s hearing loss. Looking to take action on hearing loss? Click here to find a clinic near you.

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